Chemo decision

Hi. Diagnosed with grade 2 lobular HER2 neg with a small grade 1 HER2 positive next to it. No lymph involvement. Following 2 lumpectomies I’m Now Facing making the decision to go ahead with chemo/ herceptin which has been put to me to consider. (Radiotherapy and hormone treatment had been the plan to date until last surgery showed grade 1 area HER2 +) Will no doubt go ahead as don’t like the thought of the ‘what ifs’ if I said no. Doesn’t feel like a choice to me. Hair loss and feeling really Ill terrifies me but feel so shallow to even say it when what’s important is giving you your life. Reading with interest the chemo experiences which are taking the terror out of it. Wondering if there is anyone else out there with a similar situation and experience. I’m in Scotland. Thanx. 

Hi jennie

It seems to me you’ve already made up your mind. Quite rightly, leaving any ‘what ifs’ lingering will only mean that you are tethered in cancerworld after your recovery whereas, knowing you’ve done everything you’ve been advised to do can give you the reassurance to move forward.

I’m not in the same situation as you but I was absolutely terrified of chemotherapy, to the extent that I was shown round the chemo ward twice, once at a slow time so I could meet the nurses and once at a busy time. All I saw was people contented reading, eating NHS sandwiches (that’s a challenge) and chatting. My oncologist prescribed me 2 lorazepam per session in case I did a runner (as is my instinct) and it was easy. There are also so many things they can do to mitigate side effects that it makes everything manageable and doable. Like you say, to save your life.

I didn’t have a problem with hair, for me it was eyelashes and I stubbornly held on to five. As soon as I knew I was losing hair, I got a no 6 buzzcut and, because it required no brushing or drying, I held onto most of it to the very end though it was a bit sparse. And as it regrew, the feeling of the hair was fantastic, like stroking a puppy! It’s not shallow to be horrified at losing hair, it’s part of our identity, but you can use the cold cap, which is usually very successful in protecting your hair (though it adds 2-3 hours to treatment time and takes some getting used to) and there are wigs in every colour, shape and style, even highlights. I still sit in clinic and wig-spot and the only giveaway is age - when ageing women choose something just too young for them. I speak as an ageing woman. I only worse my wig 5 times, I preferred beanies. A woman in my support group has a wig of real hair and I genuinely didn’t know she’d lost her hair till she arrived one session wearing a scarf.

Remember, it’s time limited. You may have six, nine, eighteen sessions but, as soon as the drug is out of your system, it starts growing again. It isn’t nice being reduced to a prepubescent state again, with no pubic hair, shrunken labia etc but, when you life may be at stake, you accept it, even find a funny side. What’s important is that you understand this is a choice, you’re not being forced into it but, from my own experience, I can tell you diagnoses can change again and again till you get to the point of no real choice. Once you’ve made your choice, let it go and focus on managing your life around it.

I realise I’m waffling so I’ll just say good luck with your treatment, whatever it is, and please never denigrate yourself for having doubts and fears. Everyone does. Also, remember that those of us who post on here generally do so because of a doubt or fear. We dont often get posts from people saying I’ve just completed x, y or z and it’s been a doddle. But it’s true - some women sail through with few problems. Who’s to say that won’t be you?

All the best

Jan x

I was in a similar position in February. Initial plan was bilateral lumpectomies and radiotherapy. Then cells were found in lymph nodes one side so those were removed. The lymph nodes were a surprise and showed the cancer cells were acting out of character. It was then the chemotherapy word was used. I was ‘on the cusp’ for recommendation for chemo but my oncologist seemed keen.
I asked for some time to consider it all and driving home with all the info whizzing round my head my decision became clearer. I was very afraid of chemo and all it brings. I was also very afraid of how I would feel if I said no and a few months down the line, when it would all have been over, i was left wondering.  
I begin my third cycle of seven on Saturday and can honestly say it has been much better than I feared.  
I have a lovely wig which looks just like my hair on a good day and a couple of beanies.  I will be glad when it’s all over and I still have radiotherapy on the horizon but at least I know I am doing all I can. 
All that said, this decision I think was right for me but you will be bound to weigh up all the pros and cons for your particular circumstances.

good luck whatever your decision is, I hope this helps. X

Hi @jennieHe  

Ultimately I think you have to be comfortable you can live with your choice. If you have chemo, and all is well, you won’t know whether you needed it, and all will be well so long as you don’t have long term or permanent problems from the chemo. If you have chemo, and the cancer comes back, you will know you did all you could. If you don’t have chemo and it comes back, you won’t know whether chemo would have made a difference. Age and general health play a part too. 
I have yet to meet the oncologist (meeting is next week) and I am erring towards not having chemo unless the oncologist strongly pushes it. I am not overly worried about losing my hair or being ill in the short term, but I am worried about possible longer term consequences such as peripheral neuropathy and heart damage, against a backdrop where the reduction in absolute risk doesn’t look that high.